Communication Pathways: HPV Information and Message Barriers Reported among American Indian College Students

Background and Purpose: American Indians (AI) are reported to have high human papillomavirus (HPV) infection rates. This study explores communication pathways among AI college students reporting sources and influences of HPV information. Methods: Eight focus groups with 53 AI students were conducted at four Southwest universities. Questions probed HPV knowledge and attitudes, health beliefs, cultural influences, message barriers, and communication pathways. Data was analyzed using Grounded Theory methods. Results: Schools and television commercials were common information sources; less frequently mentioned were parents and the tribal community. Preferred communication pathways were siblings, relatives and physicians. Barriers to communication included lack of information sources, stigma, traditional viewpoints limiting discussions related to sexuality, and under-representation of AIs in health media. Sources of HPV information and preferences for communication pathways influences and perceived receptiveness of various channels were identified. Conclusion: Education and health messages must take into account AI cultural perspectives, as well as informational and communication preferences. Strategies to reduce information/ communication gaps include improving inter-family communication and facilitating school-based, clinic-based and tribal community health events about protecting sexual and reproductive health. Message barriers must be addressed to reduce HPV-related morbidity and mortality

Shared and unshared barriers to cancer symptom management among urban and rural American Indians.

PurposeBefore the end of the 20th century, American Indians (AIs) primarily resided in nonmetropolitan areas. Shifting demographic trends have led to a majority of AIs now living in urban areas, leading to new health care barriers for AIs. AIs experience the poorest survival from all cancers combined compared to all other racial groups. Identifying and classifying barriers to cancer care may facilitate supportive interventions and programs to improve access and treatment.MethodsA 5-year cancer symptom management project targeted AIs in the Southwest. The first phase of the randomized clinical trial consisted of 13 focus groups (N = 126) of cancer patients/survivors and their caregivers. Discussions explored existing and perceived barriers and facilitators to cancer symptom management and cancer treatment.FindingsSignificant barriers to cancer-related care were found among urban AIs, as compared to their rural counterparts. Barriers were classified within 4 subgroups: (1) structural, (2) physical, (3) supportive, or (4) cultural. Urban AIs reported barriers that are both structural and physical (inadequate access to care and public transportation) and supportive (lack of support, resources and technology, and less access to traditional healing). Rural participants reported communication and culture barriers (language differences, illness beliefs, and low levels of cancer care knowledge), as well as unique structural, physical, and supportive barriers.ConclusionIt is important to identify and understand culturally and geographically influenced barriers to cancer treatment and symptom management. We provide recommendations for strategies to reduce health disparities for AIs that are appropriate to their region of residence and barrier type

Shared and unshared barriers to cancer symptom management among urban and rural American Indians.

PurposeBefore the end of the 20th century, American Indians (AIs) primarily resided in nonmetropolitan areas. Shifting demographic trends have led to a majority of AIs now living in urban areas, leading to new health care barriers for AIs. AIs experience the poorest survival from all cancers combined compared to all other racial groups. Identifying and classifying barriers to cancer care may facilitate supportive interventions and programs to improve access and treatment.MethodsA 5-year cancer symptom management project targeted AIs in the Southwest. The first phase of the randomized clinical trial consisted of 13 focus groups (N = 126) of cancer patients/survivors and their caregivers. Discussions explored existing and perceived barriers and facilitators to cancer symptom management and cancer treatment.FindingsSignificant barriers to cancer-related care were found among urban AIs, as compared to their rural counterparts. Barriers were classified within 4 subgroups: (1) structural, (2) physical, (3) supportive, or (4) cultural. Urban AIs reported barriers that are both structural and physical (inadequate access to care and public transportation) and supportive (lack of support, resources and technology, and less access to traditional healing). Rural participants reported communication and culture barriers (language differences, illness beliefs, and low levels of cancer care knowledge), as well as unique structural, physical, and supportive barriers.ConclusionIt is important to identify and understand culturally and geographically influenced barriers to cancer treatment and symptom management. We provide recommendations for strategies to reduce health disparities for AIs that are appropriate to their region of residence and barrier type

Communication Pathways

Background and Purpose: American Indians (AI) are reported to have high human papillomavirus (HPV) infection rates. This study explores communication pathways among AI college students reporting sources and influences of HPV information. Methods: Eight focus groups with 53 AI students were conducted at four Southwest universities. Questions probed HPV knowledge and attitudes, health beliefs, cultural influences, message barriers, and communication pathways. Data was analyzed using Grounded Theory methods. Results: Schools and television commercials were common information sources; less frequently mentioned were parents and the tribal community. Preferred communication pathways were siblings, relatives and physicians. Barriers to communication included lack of information sources, stigma, traditional viewpoints limiting discussions related to sexuality, and under-representation of AIs in health media. Sources of HPV information and preferences for communication pathways influences and perceived receptiveness of various channels were identified. Conclusion: Education and health messages must take into account AI cultural perspectives, as well as informational and communication preferences. Strategies to reduce information/ communication gaps include improving inter-family communication and facilitating school-based, clinic-based and tribal community health events about protecting sexual and reproductive health. Message barriers must be addressed to reduce HPV-related morbidity and mortality.</jats:p

Cancer-Related Symptom Management Intervention for Southwest American Indians

There is limited literature related to culturally embedded meanings of cancer and related symptoms among American Indians. A culturally appropriate intervention to improve management of cancer-related symptoms, including pain, depression, fatigue and loss of function, was tested. Two-hundred and twenty-two adult American Indians with cancer were recruited from eight Southwest sites for a randomized clinical trial. The intervention group received tailored education, a toolkit with a video, and participated in discussion sessions on cancer symptom management; the control group received information on dental care. Pre- and post-test questionnaires were administered to control and intervention groups. Measures included socio-demographics, cancer-related symptom management knowledge and behavior, and quality of life measures. Male cancer survivors reported poorer self-assessed health status and lower scores on quality-of-life indicators as compared to female cancer survivors. Significant improvement was reported in symptom management knowledge scores following the intervention: management of pain (p = 0.003), depression (p = 0.004), fatigue (p = 0.0001), and loss of function (p = 0.0001). This study is one of the first to demonstrate a change in physical symptom self-management skills, suggesting culturally appropriate education and interventions can successfully enhance cancer-related symptom management knowledge and practice

We Don't Talk about It: Cancer Pain and American Indian Survivors.

Pain is a common symptom among cancer survivors, yet is rarely talked about by American Indians. Understanding the reasons for reduced communication by American Indian cancer survivors is important for healthcare providers, family members, and others providing treatment and support for cancer symptoms. Thirteen focus groups with Southwest American Indian adult cancer survivors were audiotaped and transcribed as part of a randomized intervention to remove barriers to cancer symptom management. Constant comparative methods were employed in the data analysis, topic categories were grouped for comparison, and final assessment followed Grounded Theory methods. Findings were categorized into two major groupings: communication with family members and communication with health care providers. Within these two groupings, three themes emerged to describe cancer pain experiences and communication barriers: (1) We don't talk about it, (2) Respect for healthcare providers; and (3) Culturally prohibitive topics on death and pain experiences. Not talking about their cancer diagnosis and cancer-related pain leaves many American Indian cancer survivors without much-needed social support, contributing to reduced treatment compliance and access to healthcare. Findings have implications for educational interventions and quality of life improvement for American Indian and other underrepresented communities

We Don’t Talk about It: Cancer Pain and American Indian Survivors

Pain is a common symptom among cancer survivors, yet is rarely talked about by American Indians. Understanding the reasons for reduced communication by American Indian cancer survivors is important for healthcare providers, family members, and others providing treatment and support for cancer symptoms. Thirteen focus groups with Southwest American Indian adult cancer survivors were audiotaped and transcribed as part of a randomized intervention to remove barriers to cancer symptom management. Constant comparative methods were employed in the data analysis, topic categories were grouped for comparison, and final assessment followed Grounded Theory methods. Findings were categorized into two major groupings: communication with family members and communication with health care providers. Within these two groupings, three themes emerged to describe cancer pain experiences and communication barriers: (1) We don’t talk about it, (2) Respect for healthcare providers; and (3) Culturally prohibitive topics on death and pain experiences. Not talking about their cancer diagnosis and cancer-related pain leaves many American Indian cancer survivors without much-needed social support, contributing to reduced treatment compliance and access to healthcare. Findings have implications for educational interventions and quality of life improvement for American Indian and other underrepresented communities.</jats:p

We Don't Talk about It: Cancer Pain and American Indian Survivors.

Pain is a common symptom among cancer survivors, yet is rarely talked about by American Indians. Understanding the reasons for reduced communication by American Indian cancer survivors is important for healthcare providers, family members, and others providing treatment and support for cancer symptoms. Thirteen focus groups with Southwest American Indian adult cancer survivors were audiotaped and transcribed as part of a randomized intervention to remove barriers to cancer symptom management. Constant comparative methods were employed in the data analysis, topic categories were grouped for comparison, and final assessment followed Grounded Theory methods. Findings were categorized into two major groupings: communication with family members and communication with health care providers. Within these two groupings, three themes emerged to describe cancer pain experiences and communication barriers: (1) We don't talk about it, (2) Respect for healthcare providers; and (3) Culturally prohibitive topics on death and pain experiences. Not talking about their cancer diagnosis and cancer-related pain leaves many American Indian cancer survivors without much-needed social support, contributing to reduced treatment compliance and access to healthcare. Findings have implications for educational interventions and quality of life improvement for American Indian and other underrepresented communities

Culture-broker and medical decoder: contributions of caregivers in American Indian cancer trajectories.

BackgroundCaregivers play a special role in the management and control of cancer-related pain. For American Indians with cancer, caregivers can contribute to patient education, medication compliance, and can facilitate communication between the patient and the provider and the patient and the family.ObjectiveTo identify the role(s) of caregivers of American Indian cancer survivors.MethodsAs a part of a large randomized intervention designed to improve barriers to cancer symptom management, 13 focus groups were held among American Indian cancer survivors and their caregivers at Southwest reservations and urban sites. Focus groups, audiotaped and transcribed, used constant comparative methods in the analysis of caregiver dialogues.ResultsCaregivers are patient educators and provider culture-brokers and their communication strategies use a combination of cultural and conventional strategies in their care of American Indian cancer patients. Cultural communication styles include "talk stories" (storytelling), group (talking circles), and dialogue to manage cancer pain, educate the patient and community, and to protect the patient from stigma, reduce barriers to care, and provide support to patients and families. Active discussion with providers "re-packaged" the patient's reporting/responses to specific clinical measures (pain measure scores) and identified the need for pain medication and compliance-related issues.LimitationsFindings are not generalizable to the American Indian population outside of the sites and focus groups from which data were collected.ConclusionsCaregivers are "cultural brokers" who inform providers of the cultural nuances associated with American Indian patient care. However, caregivers voiced that cultural restriction for not discussing illness openly was a sanction and an important barrier